June 2011

[I’m promoting this question from ‘onlyash’ from her comment in another post. Hope she doesn’t mind.]

Here’s a great question from ‘onlyash’ that I wanted to try to crowdsource.

“I am a mom to a former micro preemie and I have contacted you before and your suggestions have always helped me, she is 4 now and still drinks water from a bottle. Do you have any suggestions or tricks you have used with the J-Man that you can share here.”

I’m not sure I have much in the way of great insights to share, but I’ll take a stab at a few from our experience. Those of you with particular experience with this, please share your wisdom in the comments.

We had a roller-coaster of results with bottles back in the day. Our J-Man was an ‘extended nurser’ in that he still breastfed a little until he was around preschool age. When Mary worked outside our home, I fed – or tried to feed – him pumped milk from a bottle for a long time. Sometimes this would work great; many times he’d go on bottle strike. This became an urgent problem because he really wouldn’t eat much of anything else. His diet was limited to a small number of pureed things, and even then what he’d eat or whether he’d eat them at all varied depending on mood. We were regularly frightened that he wasn’t getting enough vitamins, calories, or much nutrition in general.

We started feeding therapy with him when he was nine months old. His oral sensitivities and aversions are the stuff of legend. Getting him to let us put anything at all in his mouth took months of therapy. Even now, what he will eat is very limited.

Most of that journey is another story entirely, but with respect to drinking liquids back in those days that weren’t pumped breastmilk from anything other than a bottle, we tried all sorts of things. One thing worth noting here is that he never did sippy cups. This wasn’t because of anything we did. He just hated them and wouldn’t have anything to do with them. We’re all pretty sure it was from the ‘I don’t want anything weird in my mouth like a spout unless it’s attached to Mama’ kind of thing.

Now he drinks from these plastic, kid-sized, open travel cups. (We don’t use the spouted lids at all.) They’ve gotten him to take some drinks from different cups at school, but he’s pretty attached to our cups. Also worth noting that he almost solely drinks lightly-sweetened, decaffeinated, iced tea. Very recently he’s agreed to take a few sips of milk.

Here are some things we’ve tried.

* We eventually got him to experiment with a cup by getting acrylic shot glasses from a party store. I think they were like a dollar apiece. They’re indestructible and only hold about an ounce of liquid. If he spilled whatever was in it, no big deal. Plus it was smaller and fit better in his hands and mouth. He was probably about 18 months give or take at that point, but this is something worth trying for just about any age.

* We played with cups (started with those shot glasses and worked our way up) in the bathtub, tried to pour some water around and on his face some, and occasionally got some on his lips. We let him experiment with the cups, too, filling them with water and pouring them out, etc. Obviously we did this before soap or shampoo got in the water. We tried to make a game of it or at least make it as fun as possible. It took a lot of time, but eventually this started helping his comfort level and willingness to experiment with cups.

* He was very reluctant to let us put the cup near his mouth (as he is with about anything), so this took a lot of patience. Like many things, he wants to be in control of what is near him.

* We eventually tried heavier glasses like small jars that could withstand being dropped. With the J-Man’s sensory issues, he responds better to heavier objects. The weight often calms him. For the longest time, this was all he’d drink out of, but hey, he was drinking out of an open cup! Eventually he worked up to the travel cups.

FYI – The above are mostly from before he turned 3.

* When we want to attempt something new, we try to structure it with some sort of visuals and/or social story. With new foods or drinks, we’ll either use a written schedule-type story to indicate what he’s expected to do or use a visual that shows the same. For instance, for the written story:

1. J-Man is going to drink some milk from a new cup.
2. Take a sip.
3. Take a sip.
4. Take a sip.
5. Take a sip.
6. Take a sip.
7. J-Man is finished!

Seems redundant perhaps, but the point is that every time he takes a sip, we cross off that step. You can obviously do this with pictures, too. For instance, every sip they take from the cup you want them to drink from, you could remove one of the pictures. When all the ‘take a sip’ pictures are gone, they’re done.

I think both the structure and knowing when they’re going to be done with this task they clearly would prefer not to do helps get them started and actually doing it. Even that may take time, but persistence and much patience can pay off. The hope is that they will realize it’s not so bad and perhaps even like it.

So how did you get your child to transition to cups, try new drinks, or taste new foods? Please leave a comment and share your wisdom!

The J-Man has a tendency to want to watch the same episode of the same TV show over and over again. I imagine this is not an earth-shattering concept to many of you, and it’s not for us either. But I got to pondering why, looking for something beyond the more obvious.

It’s also not earth-shattering news that autistic kids often engage in many kinds of repetitive behaviors and prefer to repeat familiar activities. I’m sure this plays an important role in why he likes chain-watching the same episode over and over. I believe there’s a lot more to it than just that, though.

To an outsider, this sort of behavior may seem ‘non-functional’. (Hey, I think we’ve talked about supposedly ‘non-functional’ behaviors not long ago!) There certainly are many situations in which watching the same TV show over and over again may very well be little more than an occasion to zone out. However, I’m going to argue that there are conditions in which it’s not only functional but possibly a critical component to a child’s learning, autistic or not.

For what it’s worth, here’s my current thought on this issue. I believe there’s a much more specific point to his supposedly ‘non-functional’ repetitive behavior in watching and rewatching the same show. I think he’s practicing the content of the show in his head until he feels comfortable demonstrating outwardly what he’s learned. He often begins this process by watching a show in a manner that to an observer would seem passive. At some point he moves into this outward expression of concepts slowly, intermittently, and often subtly at first, but usually he’s pretty quick to get to where he consistently does it well. Like I said, it seems like he rehearses inwardly until he’s almost sure he’s ‘got it’.

For the J-Man, he particularly likes watching the same episode of Signing Time – an amazing, special needs-friendly series that teaches children American Sign Language and reading and language skills – and most recently Yo Gabba Gabba over and over. He’d probably watch an episode a half-dozen times in a row – at least – if we let him. However, it’s worth noting that the specific episode he wants to watch eventually changes, and the cycle begins again.

Here’s why I think what he’s doing has an important function to it.

* He is usually engaging with the program, first by watching intently, then interacting with it in some constructive manner (sometimes a lot, sometimes not as much, but he keeps a relatively high level of focus regardless), and involving us in some way, typically by using words, verbal approximations, or a few signs and expecting us to repeat them back to him.

* He displays greater comprehension of what’s in the episode over time. This is a very gradual process, but his assimilation of the material does increase the more he watches it. This strikes me as the very definition of practice.

* Whatever pieces of the episode that may cause him sensory (almost always auditory) distress seem to cause fewer issues over multiple watchings. It’s like he’s actively trying to work through this distress.

* This is similar to what he’s done often in the past. As a baby and young toddler, he just suddenly did things he seemingly couldn’t do before. There were any number of things we never saw him do at first. We’d just turn around and he’d done it. For example, it took us forever to catch him rolling over and sitting up. We’d turn around, and there he was rolled over or sitting up. He didn’t walk unsupported until he was 22 months old, but once he started, he was running around the house within two days. It’s like he has to organize everything in his head first before he does it in ‘real life’.

* Just as suddenly as he started wanting to watch an episode repeatedly, he often stops being interested in it. Typically this only happens after he’s started demonstrating multiple concepts he’s learned from it. Perhaps it’s because he’s gotten all he can from it for now. At this point, he moves on to another. This interest period typically lasts roughly 1-3 weeks.

Given that communication is one of his greatest challenges – and understandably one of the most frustrating for him – we look for more relaxed ways to help him practice communication. I think after a while he gets tired of being asked to interact with real-life people – most of us do! – so something two-dimensional like a TV screen or electronic gadget of some kind may prove a welcome respite for him. It’s hard to tell sometimes, but it seems that way just from what we can glean from his non-verbals and general mood.

I’ve been pondering these theories about this for a while now, but I’ve been skeptical of it for a long time because of my hesitancy to believe that TV is ever that great for kids (other than to give parents a break for a bit!). I still think for the most part that TV – of either the kid or adult flavor – is crap, but that’s another story. There are a few programs I think make a difference, though.

I’ve become much more convinced that the J-Man is learning a lot this way because of how amazingly far Dale Jr. has progressed in his development watching Signing Time and Pinky Dinky Doo with us. We do try to make it a family activity, though I confess sometimes we turn it on just so we can get a few minutes to eat or go to the bathroom.

Anyway, Dale Jr. just turned two recently. Right now he can: verbally identify almost all upper and lowercase letters (in a variety of fonts too), recognize and verbally label 8-10 colors with little or no prompting, identify God knows how many animals and objects (macaw!?), draw from a working vocabulary of probably a couple hundred words, talk in phrases and basic sentences and engage in some basic conversation, do all this in a variety of contexts (generalization!), read some words (he loves the J-Man’s written schedule board), and use more sign language than I can. Now given our family history, I wouldn’t know ‘typical’ development if it jumped up and bit me, so I’ve asked around, and everyone has told us that this is highly unusual at 24 months. Feel free to correct us if we’re wrong.

Rather than some non-functional, mind-numbing experience, I think this practice is really helping both our kids. The J-Man’s speech skills have increased tremendously of late. I’m not at all advocating dumping your kids in front of the TV all day every day. I’m inclined to think there are very few TV programs with which extended viewing would be appropriate regardless. However, I am starting to believe that using this approach with certain programs as part of a broader plan of, for example, developing verbal and reading skills can absolutely work.

We’re specifically convinced that Signing Time has been instrumental in helping our kids with word recognition, communication skills, and reading. The way they both interact with the show is quite amazing, and they, each in their own way, use those skills in other contexts during the day. We reinforce those skills all through the day in as many ways as we can.

I don’t want to turn this into a lovefest for Signing Time even though I think it’s deserved. Both kids also love Pinky Dinky Doo, which I think may be the most autism-friendly program on TV with all its structure. They’ve picked up tons from it, too. Very recently, they’ve both been really into Yo Gabba Gabba. I can see why Dale Jr. loves it because it’s so movement-oriented, music-based, and silly. I was astonished, though, that the J-Man enjoys watching it and even requests it verbally! If you’ve seen it, it’s not necessarily the most sensory-chill show in the world. It’s honestly kinda trippy. We’re still trying to discern what the J-Man is getting out of it, but when he requests something verbally and consistently, there’s something he’s working on. I’m convinced of this.

So what does this all mean? I do think structured kids’ shows that offer some level of engagement and that stimulate areas your child is working on (e.g., speech and communication, movement/imitation) can be worthwhile. I believe they can offer a lower-key way for autistic children to learn without all the extra energy it takes to interact with people socially. Therein also lies the caution. I see these TV shows as a complement only. The J-Man gets sometimes 9 hours or more of learning, therapy, and social time a day on weekdays. That’s a lot of people time, and socializing can be so draining.

If you set up TV watching times as opportunities for learning and skills reinforcement, I certainly believe it can work well for your child. As with everything else, think about it in context with the rest of the activities you and your team of educators, therapists, family, and friends are doing and how it fits in with your overall learning and developmental goals for your child. TV is simply a tool and a resource, and tools used wisely and for the right purpose can make a big difference.

If you’re interested in Signing Time and want to help support our site, you can get Signing Time DVDs through this affiliate link. We love Signing Time and understand that some people don’t care for affiliate links, so you can also just go to signingtime.com.

I love it when we have “Holy crap, I can’t believe that worked!” moments. They are admittedly rare, but sometimes you stumble across something that not only works but works so amazingly well that it’s a revelation. And the odd thing is that it may be something you’ve tried before, except now it just clicks for some reason. This time it’s social stories.

A bit of background for those of you new to the concept of social stories. Basically these are simple stories you create ahead of time or even on the fly – typically with both visuals and words – that you go over with your child as a means of rehearsing a situation that they are going to do ‘for real’. This lets you describe a situation to your child in a form that they often enjoy already – by telling a story. You can read it and talk about any pictures with your child in the same way you might Cat in the Hat.

Explain potentially upsetting situations to your child ahead of time in a safe, calmer environment like your home.

Give visual references and cues that help your child understand what is happening, what is expected of them, or what they should do.

Serve as a sort of schedule they can refer to again while they are playing out the story for real.

Take advantage of our children’s tendencies to script things by providing a sort of script for a new situation.

Reduce resistance to a variety of situations in general.

However, whipping up a picture-based social story on the spur of the moment is often not practical unless you have the equivalent of Dora’s backpack filled with picture cards. It often requires planning ahead and typically some computer-based method of putting pictures and text together. It can work great if you are much more organized and forward-looking than we are, but usually it’s when we’re already neck-deep in the mess that we realize we need them.

Cue now the real-life examples of necessity is the mother of invention.

The J-Man’s class recently went to a school assembly that involved a lot of song and loud noise. Not surprisingly, this isn’t his favorite thing to go do. But his teacher, ever the quick-thinking genius she is, drew on her experience with him and her seemingly radical idea to call what must have seemed like the educational equivalent of a Hail Mary pass. She scribbled out a social story on a sheet of paper in a tiny notepad. Just wrote it out by hand, no pictures. And it worked. She read it to him, he appeared to read and reread it to himself a few times, and then he started to calm down. He even seemed to enjoy himself a bit toward the end.

The story was just something simple. I don’t remember it exactly, but this is close enough to get the gist of it.

The J-Man is going to an assembly in the gym.
Assemblies are loud.
People will be singing at the assembly.
Assemblies are fun!

At the bottom of the paper but folded over and hidden from view was “Finished”. When the assembly was over, she unfolded it, showed him “Finished”, and he got up and the class went back to their room.

I thought the success of this might knock us all flat. I didn’t think a social story would do much for him yet, regardless of whether it had words, pictures, videos, or feel-good drugs mixed in with the paper. The fact that a few simple sentences handwritten on a little notepad worked feels like me suddenly being able to bench press an airplane.

And if that don’t beat all, this has kept working, too. Our developmental therapist was with Mary on one of our ‘let’s go practice being in public’ trips to the store. The J-Man refused to go into the store and had a pretty major meltdown from what I heard. Being the resourceful, think-on-your-feet type she is, our DT typed out a social story on her cell phone and showed it to him. She read it to him, he read it to himself, and it worked.

Then at the pool the other day for our class field trip, the J-Man really didn’t want to go to the changing room with me to put on his dry clothes to go home in. He didn’t want to leave the pool either, but Dale Jr was seriously ready for a nap and we had to go. One of his teaching assistants had the inspired idea (sensing a theme here!) to write out a social story about it being time to go. We didn’t have any paper, so she wrote it out using a colored marker and the back of a pizza box. I kid you not. Basically it more or less said, “Pool is all finished. Time to change clothes. Then time to go home.” It worked.

I’m not sure which of these situations was more amazing. To say that I am still awestruck by this is an understatement.

So I’m crazily experimenting with iPod note apps that let you tinker with font sizes and save a library of notes so we can always have social stories ready. If this proves to be the key to overcoming all sorts of issues we’re having, I may start weeping with joy uncontrollably.

Here’s one I whipped up yesterday morning when he wouldn’t get out of bed. I typed this up on my iPod Touch in about 30 seconds. This is a screen shot.

He kinda laid there in the bed on his side and read it, looking rather thoughtful about it. After about a minute of motionlessly staring at it, he finally got out of bed and on we went.

Social stories don’t work that well or at all for some kids, at least not without a lot of practice. There’s often a disconnect, especially early on, where the child doesn’t make the connection that the story has a direct relationship with what’s going to happen in their lives.

When we were part of a research study last year, they sent us an illustrated social story booklet about what would happen during our visit. The J-Man loved reading it, but seemingly had no inkling that it was any different from the books he normally reads nor did he show that he made any connection between the story and the research study building when we got there. But that seems perfectly normal. Social stories take practice to integrate into daily life. I have for a long time viewed social stories as a neat idea and worth experimenting with, which we did, but not terribly applicable to our lives. Boy has that changed now.